Home Resourse materials Know-how Newsletter ACT mission Notice board

Heavy price for the lie about HIV infection

Ye. Rydalevskaya

Narcologist, executive director of the Diaconia Charitable Foundation, St. Petersburg

Really, HIV is not as dreadful as its denial. Not one hundred fates have been broken by the so-called AIDS-denialism, a movement that denies HIV/AIDS. Its representatives deny the existence of HIV or any connection between HIV and AIDS. They maintain that the human immunodeficiency virus is an invention of pharmacological companies seeking to profit on the sale of medicines for an 'inexistent' illness… It is incredible but people sometimes believe in this delirious theory, clutching at it as a straw when they learn from doctors about their positive HIV status and experience an immense stress. Instead of taking up an anti-virus treatment, which makes it possible to live a long and happy life even with HIV infection, people scarify themselves to the progressing illness and deception…

Regrettably, HIV denialism in Russia is fairly active, to a great extent due to the Internet. Another factors contributing to the HIV/AIDS denial is also the inadequate professionalism of some medical workers and the society's negative attitude to HIV-infected people.

Sometimes the HIV denialism is supported even by committed Orthodox people despite the clear position on the real existence of HIV/AIDS indicated in the Concept of the Russian Orthodox Church's Participation in Combatting the Spread of HIV/AIDS and Work with People Living with HIV/AIDS. It sometimes happens that some clergymen even advise to reject the anti-retroviral therapy, which eventually leads to tragic consequences.

As a vivid example we will cite one sad story. It happened to Anastasia, a native of city in the Urals, who now lives in St. Petersburg. Denying the reality of HIV, Anastasia lost her loved man and herself was on the verge of death and nearly became a widow for the second time… In 2015, she and her husband came to the Sologubovka rehabilitation center organized by the Diaconia Charitable Foundation. Both Anastasia and her husband were HIV infected and both had a low immune status because for a long time they were HIV dissidents. At that time, the woman already underwent a therapy that proved ineffective and caused several side effects… Her husband abused alcohol.

Normally, we admit only men to the Sologubovka rehabilitation center but this time we conferred with one another and decided to admit both, because both of them needed help. While the anti-virus therapy had already done good to the man, the woman needed other medicines to be chosen. In the city of St. Petersburg there were more resources to help Anastasia.

Here is a story told by Anastasia (her name and those of her relatives are changed):

- I came to church when I was 17, after I lost mom and a little brother. I was searching for the meaning of lifeand felt that life does not end after the coffin… I never drank or smoked… At 23 I married a man whom I met in church. I knew that long before out meeting Sergey had used drugs for two years but later underwent rehabilitation at an Orthodox church center. The priest, who I turned to for advice, gave his blessing upon our marriage. We married. Our relations were good: our feelings were strong and my husband took a good care of me. We were parishioners at a church, and I sang in the choir while the husband helped the priest in the sanctuary and acted as bell ringer…

'HIV-infected' stigma': fear and hostility

In 1997, Sergey had a very high temperature. He lay in a hospital for infectious diseases. Perhaps, it was the first signal of the disease, but we did not know it at that time.

In 2000, he cut his hand when a window-frame fell down. Sergey applied to a hospital and there they detected HIV. My husband was invited to the regional AIDS center. After that Sergey became reticent and suggested that we should divorce. I loved him and did not want to leave him in his misfortune.

On a priest's advice I went to the Monastery of the Dormition in Pechory to pray. I have also been to the Optina Hermitage. I shared my misfortune with a hieromonkthere and he gave me a printout with a reference to an Orthodox edition. It was stated in the text that actually HIV infection did not exist, that the medicines given by doctors only aggravate the disease. I believed it all. Once at home, Sergey and I found a confirmation of this information in the Internet. I also persuaded myself with this argument: my husband and I are not certain people from a risk group since we are under God's protection, taking communion on a regular basis…

We told nobody about the HIV status. When Sergey got a brain concussion, he was taken to an ordinary hospital. However, having come to visit him, I did not find him at the ward. It turned out that he had been transferred to the specialized… narcological dispensary for the HIV infected. Though he was not a drug addict, he needed neurological help, which they in a narco-dispensary could not offer. I managed to meet with the chief physician of the dispensary and realized that my husband would not receive the necessary treatment and that the ordinary hospital just got rid of him as a HIV positive patient… I wrote a complaint to the Healthcare Ministry. Sergey continued treatment as outpatient…

I saw the medics' attitude to the HIV infected both in our outpatient clinic and in the AIDS center. Sergey was treated with disdain and dread as if he were branded. I, in my turn, grew negative toward doctors and was increasingly certain that they only worked off the money while there was no HIV in existence…

'Only God knows whether there is HIV'

Sergey developed pneumonias more and more often. There were also problems with his skin. We consulted dermatologists and they diagnosed 'dermatitis'. In the AIDS center my husband signed a written refusal to take anti-retroviral medicines.

The priests I spoke to said that this HIV topic is somewhat odd: God alone knows whether there is such a disease. I was looking for Orthodox doctors but did not tell them anything about my husband's status. Partly we applied self-treatment. My husband took immunostimulants, vitamins…

The lightning struck in 2006, when having got his feet wet in the street, Sergey could not get up in the morning. In the outpatient clinic he was given the diagnosis 'acute demyelinating polyneuropathy…' They said if he survived he would remain disabled for life, his arms and legs would work only partly. The doctor, ignorant about my husband's HIV status, sent him to the neurological ward. Sergey stayed there for three months. We spent hundreds of thousands roubles to put him on his legs. Half a year later he began walking normally. And what is strange, the blood test did not show HIV-infection. It was another contribution to my little store of knowledge that HIV is a myth…

Half a year later however, when my husband developed skin rash, he found himself in the hands of a very meticulous doctor. She discovered his HIV status from some database. There was a scandal: my husband was accused of concealing his status. I explained that we did not agree with this diagnosis and showed a photo of the previous result with the negative HIV status. I never received from the medics an answer to the question of how such a contradiction could happen. So my opinion became even stronger.

My attitude to medics worsened after this incident, too: in 2006, when Sergey failed to visit the infectologist, a medical worker came to our place and told everything to my husband's sister, who was not in the know at all. It was in 2006.

He had to put a dropper himself…

My husband was often sick. Various sores just stuck to him: flu and herpes and shingles with maddening pain. In 2008, he began telling me that he would not live long… The last six months we read an akathistos every night. 'May God let me live till Pascha', he would say when a priest gave him communion at home.

Once we both had the flu. After taking strong antibiotics I felt a little better, while he did not. The doctor said he had pneumonia. Sergey was taken to a general hospital. The hospitalization appointment card indicated the HIV status. Precisely for this reason Sergey lay not in a ward but in a corridor. But in the same hospital a year ago he was treated differently. At that time they did not know about his HIV status. But now the nurses sniffed scornfully.They say he was a drug addict and HIV-infected at that, and we, they say, have to instilla medical dropper in him? Sergey said, 'Let me put it myself'… And he did it! I ran up to the chief physicians, saying, 'How can they treat people this way?! It is a genocide, indeed…' I wanted to go to the Healthcare Ministry but could not leave my husband.

Despite his serious condition, Sergey gave me moral support and tried to be joyful. He enjoyed life so much and was always cheerful and did not want to die, and he worried about me very hard. But he was getting worse. His relatives and friends began coming to visit him and he made his farewells. But I did not believe he could leave. I begged medics to take him to the intensive care ward. He gasped for breath, and I ran to get oxygen bags. Then I ran to the nurses: 'Get a wheel stretcher immediately! He has to go to the intensive care ward!' At last he was taken to it.

It was already night, and I could not stay in the hospital and went home. And half an hour later anfuneral undertaker knocked at my door. I was shocked by such cynicism and became hysterical…

Later I found out that the HIV stigma persisted even after the death, as Sergey's body was the last to undergo autopsy in the morgue…

Still, I refused to recognize HIV and the need for an anti-retroviral therapy. I blamed myself for another thing, for my failure to press for a normal treatment to be given to my husband. I thought that he might have asthma, that the doctors did not examine him properly. And actually I hated the doctors…

The burial service was read over my husband during the Bright Week. I felt some conciliation; there was a feeling of Pascha in my soul. I realized that Sergey endured all that was measured off for him. I was sure that his soul was going to God. It gave me consolation…

At the second circle of lie

...I was in a deep depression. I could no longer sing in the choir (I believed it was hypocrisy because my soul refused to sing) and decided to plunge into a different activity - in restoration of icons and icon painting.

My husband told me before his death to marry again but I totally rejected this idea for a long time. And three years after I met another man in the church. I was difficult for me to live for myself. I had to take care of somebody…

Dima never took drugs. He was inchurched and was kind. He knew about the death of my first husband. I told him about the odd story about HIV, saying that such was my husband's diagnosis, but did not believe it because I believe the doctors receive kickbacks for supporting the HIV myth. And the 'HIV-infected' diagnosis is just a new way of destroying people, like in mental houses at the Soviet time… I warned Dima that in my time I refused to take an anti-retroviral therapy I was proposed as the wife of a HIV-infected man and that anything may happen… My husband said that for him this question (whether I have this disease or not) is not the most important. We married. It was in 2011.

In a little while I was found by people from the AIDS center. The infectologist explained that after the death of my first husband they discovered some sealed sample I once turned in for analysis and that it showed a certain borderline condition. All right, I submit to a blood test. And two weeks later I am summoned: 'You are HIV positive'. They began proposing a therapy. I was afraid that they would now stigmatize me together with my second husband. I still believed that there was no HIV either at all or in me. Physically I felt normally, though tied sometimes, but I thought it was on account of my emotional experience of the second marriage. So I again wrote a refusal to undergo the therapy.

In 2013, Dima had repeated stomatitis. In 2014, he was in hospital, after which he was found at his residential address, invited to visit a therapeutist and notified of his HIV status. He and I were shocked… I am grateful to my husband for the fact that he did not start to spell things out with me…

At that moment I had a breakdown. I lost much weight but thought the reason was a stress rather that the illness.

At the AIDS center I met a very good and nice doctor. Perhaps he was the only one who talked to me humanly. He explained: you should undergo treatment; you can still give birth to child (the baby from the first marriage died in childbed)… And I began to doubt: what if this disease does exist? But it was very difficult and dreadful for me to accept this status.

Blame, bitterness, disappointment

For half a year I had a deep depression and loss of strength. I could hardly make myself go to work.And I prayed: 'O Lord, open the truth to me! What all this for? After all we go to church, take communion…'

One of our close friends talked to a priest about us, and the priest answered, 'Apparently, they are so sinful that the Lord is bringing them to reason…' I developed an immense inferiority complex. And I was the last to come up for communion…

So, once our colleagues and we were invited for a diocesan reading. There were sisters from the sisterhood of mercy. I thought, 'Lord, help me. Let somebody give me a competent and unbiased answer without pursuing his own interests'. I wrote a note to the presidium of the assembly.

On the second day, the priest introduced me to doctors from the AIDS center. They talked to me very warmly and cordially. We came and had our tests. My virus load proved to be gigantic - 1 750 000! My husband's result was also bad.

I began feeling guilty. I realized that the false information caused my first husband's death and my second loved one already began ailing. I hated myself. I thought: if only he may recover and I may… die the sooner the better. My husband, feeling my mood, began to control me to see if I take the prescribed medicines.

The therapy prescribed to Dima did not help him. His dermatitis persisted; he lost 42 kilograms. He saw that I did not want to live. As a result of all this he began to drink his fill.

We were saved by the Sologubovka rehabilitation center of the Diaconia Charitable Foundation in St. Petersburg. My husband took with him all the medicines prescribed to him. And a miracle happened: after three months spent in the center, my husband gained weight to weigh 65 kilograms. His test showed 200 immune cells instead of 69.

When Dima came back looking better I began to believe that there was a therapy that worked. Whereas the medicines prescribed to me did not help: my hemoglobin fell down to 60; I suffered from continuous nausea and vomiting. And now it was I who began to tell the doctors: I want to live. So, let us do something. I was sent to the AIDS center. They changed the therapy there, but it did not suit me either, as it swelled up, had my chronic pyelonephritis worsened and temperature subfebrile. Though the virus load fell down a little (to 1 500 000), the immunity cells decreased to 60. I called to the priest to say that I was a gone goose… He advised me to take my health history from the AIDS center and to go to Diaconia in St. Petersburg.

In the end of 2015, my husband and I moved to Petersburg. The staff of the Diaconia Charitable Foundation helped me to obtain quickly a temporary registration and already after a month I entered the AIDS center's hospital. They chose anappropriate therapy for me there. The number of immune cells increased to 200; the viral load decreased from 1,5 million to 15 thousand. My condition considerably improved.

The priests who once supported us in our HIV denial, now, so to say empirically, changed their attitude to the problem. One priest even seemed to feel guilty, though I do not intend to blame anybody except myself. I am grateful to the priests: they never left us, and now, in another city, they call us to find out what is up and pray for us. Our spiritual father supports us, saying, 'Come on, be treated; it is the Lord Who has given us doctors'…

I am grieved and disappointed by the fact that the false information could have cost three lives. I tell my story to help others not to become hostages to a lie…

At present Dmitry is recovering at the Sologubovka center. Anappropriate therapy has been selected for Anastasia as well. Fortunately for this family, their condition is gradually improving. We will continue helping them.

I wish that Anastasia's sad story should make those who remain HIV dissidents ponder over the issue. The false information may lead to a tragedy, whereas medical aid in treating HIV infection ensures a long and full-fledged life.

People are often reluctant to accept their HIV status because of stigmatization and discrimination, as the 'HIV-infected' stigma makes one unprotected and vulnerable, although such people often become guilty for naught, like Anastasia, who had been a church girl since 17 years old and for several years worked in a monastery and did not have bad habits.

Medical workers, too, should ponder over this story, because their incompetence and rudeness prevent people from accepting their HIV status and beginning treatment and turn them into HIV dissidents. It also applies to the clergy and all of us.

TopTop of the page

Home Resource
(in Russian)
Newsletter ACT mission Notice board

Copyright (c) Round Table "Education for change and diaconia", 1996-2018. All rigths reserved.